The Generator

Last night around 10 pm, we had a major thunder storm roll through our neck of the woods. Lots of thunder, lightning, and heavy rains.

Evie and I watched the skies from our back door. We oohed and aahed at the light show. Then quickly scampered back into the house when the thunder clapped.

Our satellite lost signal due to the storm, so instead we put on old episodes of Star Trek on Netflix. All three of us were comfy and snuggled into bed while the storm raged outside.

Then I got an alert on my phone: "Severe thunderstorms for Clark County." Clearly we didn't need an alert to know this was happening. But it wasn't the alert itself that caught my eye. When I clicked on the link provided, I was taken to a web page that showed something far more ominous than a thunderstorm ... power outages.

Already, 19,000 people had lost power in our surrounding area due to the storm.

I read the news to Jeff.

He looked at me with the serious face we both so often wear these days.

"You need to try to start the generator - just in case."

Because for us, a power outage is more than an inconvenience. My husband lives on life support. And he sleeps on a special rotating air mattress that helps prevent pressure sores on his skin. The battery for his wheelchair ventilator was fully charged, so in the case of an outage, we already had several hours of battery power available to keep him breathing. But we don't have a secondary power source for his bed. So we would need the generator for that.

Luckily, we were still at Yellow Alert at this point. We still had power. But Jeff was right - I needed to make sure the generator would fire up now. Because the alert status could hit Red at any moment.

Here's the thing: I had never started the generator before.

My father-in-law powers it up every once in a while to make sure it's working properly. He even wrote out simple, easy-to-follow instructions for me.

Until tonight, I'd never really looked at them.

Jeff told me to pull the generator away from the wall and make sure I had enough space to yank the cord. He said I didn't need to put the garage door up because if it fired up, I wasn't going to keep it on for long. I listened intently to his instructions. He's so good at talking me through things.

I put my headlamp on, got the instructions, and went to the garage.

I lugged the heavy generator into the middle of the open space in the garage and inspected all the elements. I found the gas lever, the choke, the power switch, and the pull handle.

The first three instructions were easy:

Gas on, check.

Choke on, check.

Engine switch on, check.

Then came the fourth instruction: "Pull starter rope until engine starts."

I knew this one was going to be the big hurdle.

I'm a small woman. With some pretty un-muscular arms. And tiny wrists. And dainty hands.

I didn't have much confidence that this would actually work.

I grabbed the handle and pulled.

The engine made a whirring sound, then stopped.

I pulled again. Same thing.

I pulled yet again. Still same thing.

I felt a twinge in my right shoulder. Like it was saying, "You're killing me, Sachs!"

I thought, maybe I need to pull slowly at first - until the rope had some tension, then pull fast. That was even worse than my first three attempts.

I took a breath and exhaled with force.

Kristen, you need to pull as hard as you can. 

Pull it like the power just went out.

I yanked the cord hard and fast.

The engine whirred again, louder. And this time it didn't sputter out. It thundered to life, then settled into a low rumble.

I slowly turned off the choke, following the final instruction, then I let out a little cry and laugh combined. I could NOT believe it started.

For a few seconds, I just stood there taking it all in. The sound of the engine roared in my ears, the smell of the exhaust invaded my nose. It was loud and smelly, but I didn't care. Because that sound and that smell meant one thing to me: Life.

I let the generator run for another thirty seconds, then I shut it off.

I darted back in the house and shouted, "Did you hear it?"

"No!" Jeff said as I got to the bedroom. "Did it work?"

"I GOT IT STARTED!" My enthusiasm couldn't be hidden.

The surprise on his face mirrored the look on mine. Evie jumped up and down clapping. She was wearing her headlamp too.

The three of us celebrated our little victory as the storm continued to pound down.

In the end, we didn't lose power last night. But if we had, we were ready to spring into action.

There's a lot of planning that goes into living a life with a disability, especially if that life involves life support. Being proactive is just as important as being responsibly reactive. It's a lesson we've learned - sometimes the hard way - over and over ever since Jeff's injury.

Because the storm that hit us last night was just a blip on the radar compared to the one we've weathered every day for the last five years.

Me and my little storm chaser as we prepared for a potential power outage.

On Being Resilient

Yesterday Jeff started running a fever. His spasms were out of control, and he was having random episodes of autonomic dysreflexia.

All sure signs of a UTI.

We called his nurse and told her the symptoms and what we thought it was. She agreed, and we had antibiotics within 2 hours.

Still, Jeff and I are always trying to think a couple steps ahead of his symptoms, and we try to be as proactive as we can. So when he looked at me and said, "You might want to pack," I knew exactly what he meant.

If Jeff's symptoms don't start showing improvement in 24 hours, we'll have to head to the hospital. And any hospital trip requires preparation. I have to take a ton of supplies. I know that sounds weird - taking medical supplies to a hospital. But believe me, it just works out better when I can whip out one of our home supplies rather than asking a nurse or CNA to track something down. I also have to pack for myself because I try not to leave Jeff's side anytime he's at the hospital. So that means clothes, personal necessities, cash on hand, etc.

There's also the ventilator battery, Jeff's medications, the list of Jeff's medications, the printout of the ventilator settings, a copy of our power of attorney, a printout explaining AD ...

The list of what we need to take is long.

So I spent a couple hours yesterday, off and on, gathering up necessities for a "just in case" scenario.

And when Evie got home from school, I told her that Daddy wasn't feeling good and we might have to go to the hospital. She immediately went into his room and I heard her ask quietly, "Hi Daddy. How are you feeling?" Then she went into her bedroom and started packing a few items of her own, in case she has to stay with Nana and Papa for a few days.

We've all been through this before.

* * * * *

Jeff was starting to feel a bit better by the evening, but we were still on high alert. Things can change so quickly with his health when his body is off. And when his health is hanging in the balance, the atmosphere in our home changes. Things become very serious. Even though we try to keep it light, there's a heaviness that we all feel.

So just before Evie got into the bath, I wasn't too surprised when she turned to me with tears in her eyes. I pulled her close and let her tears fall. "I don't want Daddy to have to go to the hospital," she sobbed. "I'm scared."

In the past, she'd always had more anxiety about being away from us, but now that she's older, this was the first time she expressed concern for Jeff first and foremost.

She got into the bath with red eyes, and began washing away her sadness. By the time she was finished, she emerged with a smile.

I was sitting on my bed, which is next to Jeff's bed, and I thought Evie was going to come over and sit and cuddle with me. Instead, she walked over to Jeff's side and said to him in a gentle voice, "Daddy, can I take your blood pressure?"

"Sure," Jeff said back to her.

So she pushed the button and watched the numbers on the machine count up. When it hissed, she read out the numbers, "110 ... over ... 75." She looked at me for confirmation that she'd read it out correctly. I nodded and smiled at her.

"Is that good?" she asked.

"Yep, that's perfect for me," said Jeff reassuringly.

* * * * *
Later that evening, just before bed, she took his blood pressure again. And this time she held his hand while she did it. Earlier in the day I was doing the same thing. I knew Jeff had no idea she was doing it. He can't feel it, and he couldn't see it because it was out of his vision line. Jeff's fingers no longer bend - they are stiff from years of lying flat. But his skin is soft and warm to the touch.

Evie's fingers looked so little wrapped around his thick hand.

I walked to the other side of Jeff's bed, and the three of us smiled quietly at one another - our smiles were a mix of concern and love. Evie leaned over and gave Jeff a hug. She put one arm on his stomach, and put her other hand on his shoulder. I leaned in for a hug as well. With my arm on Evie's arm, I buried my face in Jeff's neck.

And we held tight to one another for a nice, long family hug.

"This is my favorite," Jeff said softly. "My girls."

* * * * *

This morning, Jeff's fever is gone, and it looks like the medication is working. So we're keeping our fingers crossed that we can avoid a hospital visit.

After Evie went to school, I told Jeff how she had cried last night before getting in the bath. But that she didn't want him to see. And how I observed a resiliency in her when she came out of the bathroom and went right into nurse mode.

He looked at me and said, "She learned it from you."

I smiled and took in the compliment. And I guess he's right. I realized that that resiliency - that falling apart followed by calmness when it comes to dealing with difficult, scary issues - is one of the things I'd like to pass along to Evie.

Granted, she can scrape a knee and convince us all that the world is coming to an end. But when it comes to caring for her dad, she's calculated ... measured ... confident.

What a treasure this girl is to us.